Musicophilia: Tales of Music and the Brain (37 page)

Heidi could be eloquent and funny, and she loved to spend hours listening to music and playing the piano; she was already composing little songs at eight. She had all the energy, impulsiveness, verbosity, and charm of Williams syndrome, and many of the problems. She could not form a simple geometric shape with some wooden blocks, as most children can do by nursery school. She had great difficulty placing a set of nesting cups into the right order. We went to the aquarium, where we saw a giant octopus, and I asked her how much it might weigh. “Thirty-two hundred pounds,” she replied. Later that day, she estimated that the creature had been “as big as a building.” Her cognitive impairments might be, I thought, quite disabling— both in school and in the world. And I could not avoid the feeling that there might be a sort of formulaic quality to her sociability, an automaticity. It was difficult for me to see her, at eight, as an individual separate from the superficial qualities of her Williams syndrome.

But ten years later, I received a letter from her mother. “Heidi has just had her eighteenth birthday,” Carol wrote. “I’m attaching a picture of her with her boyfriend at their homecoming dance. She is in her senior year at high school and has definitely come into her own as a young woman. Dr. Sacks, you were right when you predicted that the ‘who’ would emerge through the ‘what’ of Williams syndrome.”
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Heidi was nineteen now, and despite several brain surgeries to treat increased pressure (such procedures are occasionally necessary in some people with Williams syndrome), she was planning to leave home soon, to attend a residential college program where she would take academic courses, receive job coaching, and prepare to live independently. She planned to learn how to be a professional baker— she loved watching people decorate cakes and make desserts.

But a few months ago, I received another letter from her mother, telling me that Heidi had started a new job— and it sounds as though she may have found another calling:

O
f the five hundred or so neurological patients at my hospital, about half have dementia of various sorts— from multiple strokes, from cerebral hypoxia, from toxic or metabolic abnormalities, from brain injuries or infections, from frontotemporal degeneration, or, most commonly, from Alzheimer’s disease.

Some years ago, Donna Cohen, a colleague of mine, after studying our large population of patients with Alzheimer’s, coauthored a book called
The Loss of Self.
For various reasons, I deplored the title (though it is a very good book as a resource for families and caregivers) and set myself to contradicting it, lecturing here and there on “Alzheimer’s Disease and the Preservation of Self.” And yet, I am not sure that we were in real disagreement.

Certainly someone with Alzheimer’s loses many of his powers or faculties as the disease advances (though this process may take many years). The loss of certain forms of memory is often an early indicator of Alzheimer’s, and this may progress to a profound amnesia. Later there may be impairment of language and, with the involvement of the frontal lobes, loss of subtler and deeper powers, like judgment, foresight, and the ability to plan. Eventually a person with Alzheimer’s may lose some fundamental aspects of self-awareness, in particular the awareness of their own incapacities. But does the loss of one’s self-awareness, or some aspects of mind, constitute loss of
self
?

Shakespeare’s Jaques, in
As You Like It,
considering the seven ages of man, sees the final one as “sans everything.” Yet though one may be profoundly reduced and impaired, one is never sans everything, never a tabula rasa. Someone with Alzheimer’s may undergo a regression to a “second childhood,” but aspects of one’s essential character, of personality and personhood, of self, survive— along with certain, almost indestructible forms of memory— even in very advanced dementia. It is as if identity has such a robust, widespread neural basis, as if personal style is so deeply ingrained in the nervous system, that it is never wholly lost, at least while there is still any mental life present at all. (This, indeed, is what one might expect if perceptions and actions, feelings and thoughts, have molded the structure of one’s brain from the start.) This is poignantly clear in such memoirs as John Bayley’s
Elegy for Iris.

In particular, the response to music is preserved, even when dementia is very advanced. But the therapeutic role of music in dementia is quite different from what it is in patients with motor or speech disorders. Music that helps patients with parkinsonism, for example, must have a firm rhythmic character, but it need not be familiar or evocative. With aphasics it is crucial to have songs with lyrics or intoned phrases, and interaction with a therapist. The aim of music therapy in people with dementia is far broader than this— it seeks to address the emotions, cognitive powers, thoughts, and memories, the surviving “self” of the patient, to stimulate these and bring them to the fore. It aims to enrich and enlarge existence, to give freedom, stability, organization, and focus.

This might seem a very tall order— nearly impossible, one would think, seeing patients with advanced dementia, who may sit in a seemingly mindless, vacant torpor or scream agitatedly in incommunicable distress. But music therapy with such patients is possible because musical perception, musical sensibility, musical emotion, and musical memory can survive long after other forms of memory have disappeared.
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Music of the right kind can serve to orient and anchor a patient when almost nothing else can.

I see this continually with my patients, and I hear of it constantly in the letters I receive. One man wrote to me about his wife:

And yet this is a woman who is, in most other spheres, grossly forgetful and disabled. (Nietzsche, too, continued to improvise at the piano long after he had been rendered mute, demented, and partially paralyzed by neurosyphilis.)

The extraordinary neural robustness of music is also brought out in the following letter I was sent, about a well-known pianist:

Especially moving here is not merely the preservation but the apparent heightening of musical powers and sensitivity, as other powers wane. My correspondent concluded: “The extremes of musical accomplishment and illness are so plainly evident in his case; a visit becomes miraculous as he transcends the disease with music.”

M
ARY ELLEN GEIST,
a writer, contacted me a few months ago about her father, Woody, who began to show signs of Alzheimer’s thirteen years ago, at the age of sixty-seven. Now, she said,

A few weeks later, I had the pleasure of meeting Mr. Geist, his daughter, and his wife, Rosemary. Mr. Geist was, in fact, carrying a newspaper, a neatly furled
New York Times
— though he did not know it was the
New York Times,
nor (apparently) what a “newspaper” was.
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He was well-groomed and neatly dressed, though this, his daughter later told me, had needed supervision, for left alone he might put on his pants backwards, not recognize his shoes, shave with toothpaste, and so on. When I asked Mr. Geist how he was, he replied, pleasantly, “I think I am in good health.” This reminded me of how Ralph Waldo Emerson, after he became severely demented, would answer such questions by saying, “Quite well; I have lost my mental faculties but am perfectly well.”
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Indeed, there was an Emersonian sweetness and reasonableness and serenity in Woody (as he immediately introduced himself)— he was profoundly demented, without doubt, but he had preserved his character, his courtesy, his thoughtfulness. Despite the manifest ravages of Alzheimer’s— his loss of event memory and of general knowledge, his disorientation, his cognitive defects— the behaviors of civility, it seemed, were ingrained, perhaps at a much deeper and older level. I wondered whether these were merely habits, mimicries, residues of once-meaningful behavior, now empty of feeling and meaning. But Mary Ellen had never thought this— she felt her father’s civility and courtesy, his sensitive and thoughtful behavior, to be “almost telepathic.”

“The way he reads my mother’s face to find out how she is doing,” she wrote, “the way he reads her mood, the way he reads people in social situations and acts accordingly…is beyond mimicking.”

Woody seemed to be tiring of questions to which he could not supply an answer (such as “Can you read this?” or “Where were you born?”), so I asked him to sing. Mary Ellen had told me how, since she could first remember, the whole family— Woody, Rosemary, and the three daughters— had sung together, and how singing had always been a central part of family life. Woody had been whistling when he came in, whistling “Somewhere over the Rainbow,” so I asked him to sing it. Rosemary and Mary Ellen joined in, and the three of them sang beautifully, each harmonizing in different ways. When Woody sang, he showed all the expressions, emotions, and postures appropriate to the song, and to singing in a group— turning to the others, awaiting their cues, and so on. This was so with all the songs they sang— whether they were exuberant, jazzy, lyrical and romantic, funny, or sad.

Mary Ellen had brought along a CD Woody had recorded years before with his a cappella group, the Grunyons, and when we played this, Woody sang along beautifully. His musicality, at least his performing musicality, like his civility and equanimity, was completely intact— but again, I wondered if it could be just a mimesis, just a performance, representing feelings and meanings he no longer had. Certainly Woody
looked
more “present” when singing than at any other time. I asked Rosemary whether she felt that he, the man she had known and loved for fifty-five years, was totally present in his singing. She said, “I think he probably is.” Rosemary looked tired, exhausted, from her almost nonstop caring for her husband, and the inch-by-inch way in which she was being widowed, as he lost more and more of what used to constitute his self. But she was least sad, least widowed, when they all sang together. He seemed so present at such times that his absence a few minutes later, his forgetting that he had sung (or could sing), would always come as a shock.

Given her father’s powerful musical memory, Mary Ellen asked, “Why can’t we use this as an opening…embed shopping lists, information about himself, in his songs?” I said I feared this would not work.

Mary Ellen had, in fact, found this out already for herself. “Why couldn’t we sing him his life story?” she had written in her journal in 2005. “Or the directions from one room to the next? I’ve tried— it doesn’t work.” I too had had this thought, in relation to Greg, an intelligent, very musical, very amnesic patient I had seen years before. Writing about him in
The New York Review of Books
in 1992, I observed:

But by 1995, when “The Last Hippie” was republished in book form (in
An Anthropologist on Mars
), we had got our answer, and it was resoundingly negative. There was not, and perhaps could never be, any carryover from performance and procedural memory to explicit memory or usable knowledge.

While, at least in someone as amnesic as Greg or Woody, singing cannot be used as a sort of back door to explicit memory, still the act of singing is important in itself. Finding, remembering anew that he
can
sing is profoundly reassuring to Woody, as the exercise of any skill or competence must be— and it can stimulate his feelings, his imagination, his sense of humor and creativity, and his sense of identity as nothing else can. It can enliven him, calm him, focus and engage him. It can give him back himself, and not least, it can charm others, arouse their amazement and admiration— reactions more and more necessary to someone who, in his lucid moments, is painfully aware of his tragic disease and sometimes says that he feels “broken inside.”